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Author
Topic: At 52 I feel as if I have lived my life. Anyone else? (Read 18586 times)

Since some months I strongly feel as if I have lived my life, meaning, I am done with it.Recently, I read an article in a Dutch newspaper on how LTS felt... and it came as no surprise that most of them shared my experience.Some of them put it as follows : "though I am physically well at 50, I mentally feel like a 75 year old... "

Could it be the constant fight, the struggle to stay alive, loosing your job and health at a relatively young age?

I wonder if others feel the same...

love

Hermie

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Diagnosed in 1987 and still kickingViread, Kivexa (Epzicom),Viramune once daily

Well,...I'm 56 years of age. There are some days when I certainly feel older, and more tired. There are many more days, when I feel younger, and upbeat ! A lot, for me, depends on who I surround myself with, and what I keep on my agenda, on a daily basis. So, I am thankful I have a great family, job, a supportive partner, and friends. On those crappy days, ( and there are crappy days) I just roll with the punches, as best I can. I try not to think, of what may happen, 3 weeks, 3 months or three years down the road. For myself, and being 56, I still have a lot of living to do, and can hopefully keep this pace for a long time ! I will be turning 57 in December, I am looking forward to that next big number "60"

But I do recognize there might be differences between my situation,where pretty much I began my late teens and early adulthood with the disease and someone who was on there life's path and became infected.

HermieI can understand the feeling....of being so tired of being tired that its just too much to take any more. So, that said, I think its possible to find meaning in life to keep on living. At least Kurt and I have each other.

I understand that feeling also . After being diagnosed things changed quickly for me . I lost my insurance , a business within the first year . After that I spent the next twenty years trying desperately to have a normal life despite having to go on disability . I tried so hard and lived so fast that I never dealt with my feelings of living with Aids . After awhile all these feelings I never had time to acknowledge took its toll on me , I was cracking up and I did not know why . I finally had no choice , I had to put every thing else aside and deal with something I should have done 20 years ago .

I am glad you shared this feeling you are having with us , admitting you feel this way is the first step to being able to deal with it in a positive way .

"I have found that, after 50, I have also learned to say f*** it, it'll keep, no matter what "it" is." quote Mark.............................................................I couldnt have put it better myself! Only now, it's after 60 for me ...and boy the list is getting longer of things that can be put off or that I just cant do any more.

i have been poz since 1991 and was essentially forced out of dental school my sophomore year and left with $100,000 in debt that i cannot possibly pay back. You cannot declare bankruptcy. They garnish your wages and can garnish your social security should you finally make it to qualify. Failure to pay your loans mean they put sanctions on your professional license, in my case I am a respiratory therapist. So they would take that away from me. And then,,,,,,how do i pay my bills then. I have been struggling with this a living on less that paycheck to paycheck each year. I mean, I have made it this far for some reason but am not sure why. I mean, what is the point. I need to find a reason to keep going and it gets harder and harder every month. The financial stress has taken a much larger toll on my life than anything HIV has thrown at me. I have called the ACLU, the US Dept of Justice who has my loans, the GMHC, and tons of other organizations. My final hope was the AIDS Law project and even they dropped the ball on me. So what do I do?? I have been off meds for almost 2 years now as my "savings plan". The copays for each of my meds are $100 each which is 400 and then about 300 on all the other stuff for the side effects like IBS, insomnia,diarhhea,depression, anxiety,panic attacks just to name a few. Now I am developing diabetes and other ailments that effect guys like me who are going to be 50. All of my friends have died. I try and focus on the good things in my life. but it just is not enough to keep me going. I cannot see the light at the end of this tunnel. I keep praying that i will. I work 72-100 hours per week, which of course is used against me----i "make to much money" to qualify for any type of assistance. I cannot afford a lawyer to help me bring an adversarial hearing against the student loan people. It has taken me this long just to finally reestablish credit. So, what to do?? My non hiv friends and family just don't get how hard it is to go through all of this. I am losing touch with sanity at times.

i cannot afford to pay for meds and my student loans and put gas in my car and food on the table. And the student loan money has to be paid first. I have made a short term deal and pay $700 per month but this does not even cover the interest on the loan and my balance goes up each month. May Kenneth Cole could hold ME a fundraiser LOL

POZ -- that is seriously fucked up. I've only heard tangentially about the abuse of the student loan system -- your story is horrifying. Maybe it's time to think of taking desperate measures. If Betty is right that being on SSD leads to forgiveness of the student loans, then maybe you should look at your chances of getting on SSD. Unfortunately, I hear it's a lot harder for an HIV+ person to game the SSD system then it was in the 80's. It will depend on 2 things I guess -- if you are actually sick these days in some quantifiable way from HIV, or if you know of a doctor that's willing to say you are disabled. Maybe others who have dealt with SSD more recently could offer advice on this.

Unless something drastic happens healthwise, it's very difficult to receive disability these days. Correct me if I'm wrong but the procedure itself takes up to two years or more only to be told you're rejected. Appeals and lawyers seem to follow and Lisa can attest to the emotional wringer you must go through without guarantee.

I'm making a broad appeal to ALL forum members to put our collective heads together to see what we can come up with.

Poz I think you should post this in Living With and Off Topic to reach a broader audience.

HI Poz... When reading your post I saw that you said I'm "off " my meds now . That means to me that you probably need to be taking your meds now . If this is true I urge you to consider seeing your doc. and starting meds again. I realize things are tough now and you are struggling . If your health is your first priority then you will most likely survive these troubling times too fight another day. I wish you the best .... Jeff

Since some months I strongly feel as if I have lived my life, meaning, I am done with it.Recently, I read an article in a Dutch newspaper on how LTS felt... and it came as no surprise that most of them shared my experience.Some of them put it as follows : "though I am physically well at 50, I mentally feel like a 75 year old... "

Could it be the constant fight, the struggle to stay alive, loosing your job and health at a relatively young age?

I wonder if others feel the same...

love

Hermie

Being 55 and having lived with HIV for almost twenty years, I must admit that there are times that I, too, feel like giving up occasionally. However, I never stay in the giving up mode for more than a day or so. I re-focus myself on the things that are going right for me, and I down play what ever is not right. This stategy helps me to cope with the bad days.

Correct me if I'm wrong but the procedure itself takes up to two years or more only to be told you're rejected. Appeals and lawyers seem to follow and Lisa can attest to the emotional wringer you must go through without guarantee.

Depends what state you're in I guess -- only took me 4-5 months for the entire process in New York back in 2002. They expedite the HIV cases there.

I am 52 and do get real tired. My thinking gets off once in a while. Doctors tell me all the time well You knew but i was afraid to start meds until i was down for 6 months. I think i do fit in to the LTS since i have lived with it for 21 proven years. i do not take fun drugs but do like to have some beer for my anxiety. Getting to the point where feel like shit next morning after 3. I do admire you all and enjoy reading Your posts. i feel like i am not alone.

i want to thank everyone for the support i have received. sometimes it just feels good to vent about things. i want to correct something---i am working 50-60 hours a week not 70 to 100. my ambien was kicking in as i was finishing my posting up.as far as my meds.....i am supposed to be on them. but how? skip buying food? gas? the rent i must pay? i guess i am gonna see how far i go before i get sick. not sure of other options. I simply cannot stop paying for my student loans, then i lose my job and all my health benefits. I cannot get ssdi unless i have an opportunistic infections and fit the definition of aids.it great ( and sad) that there are so many people in this position. someone mentioned a march on washington. Maybe its time to do it. Something has to change. I am tired of living on less than paycheck to paycheck.i seriously need a vacation but cannot afford on at all. i do promise to keep going if the rest of you do as well.

I understand you comletely Herman. I definitely feel that my best years are "behind me". I had a GREAT decade of my 20's....I just wish I'd had that magic crystal ball that would have said "enjoy this time, because you will contract a virus that will change your life forever"....maybe I would have done some things differently.

I still say being "poor" is the worst aspect of being a long-term survivor, for me.That and feeling like my career was pretty much wasted. I flopped around "in limbo" for the years 1996-2000, after the protease drugs. I should have gone back to work after my two-year leave of absence with the State of GA.

Hindsight is 20/20 ........coulda, shoulda, woulda.......

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

HermanHi. Thinking of what you wrote. I am older than you and never more than now have I thought about this sort of thing. It's part of the aging process to mull over this stuff. It can truly f up a day if you let it. It's a decision. Em

thanks for the links to information regarding my student loan dilemma. if you read the second answer on that one post it is the experience i have had---i cannot find a lawyer who has experience in this area and i certainly cannot afford to pay to find one.i am gonna go to my congress person, i mean, at this point what do i have to losethanks again

My concern isn't that I've already lived my life, but that I haven't yet figuredout how to live my life. And I'm afraid that I'm going to run out of timebefore I figure it out.

Regards,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I still say being "poor" is the worst aspect of being a long-term survivor, for me.Hindsight is 20/20 ........coulda, shoulda, woulda.......

So true. Especially when I see a lot of my friends being able to do things I can't (going out to eat every weekend etc.). Today I start volunteering at my ASO. I'm hoping that when I finish my degree, I can work there very part-time. Hopefully this might give me a foot in the door. Then, of course, when one works, even part-time, one has to deal with losing state benefits (Medicaid, food stamps). It feels very defeating.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Betty... I know what you mean . I sometimes think I live in a fantasy world , I still have hope that things are going to change and one day I wont have to live in poverty just because I have a virus that requires medical care .... It all seems so unfair . I look at how other people have to live and die all around the world and sometimes I feel guilty for allowing myself too feel cheated in any way .

I was really touched by your message and wanted to respond. I'm 50 and must admit I do feel a lot older at times, usually when I'm sick. I've been diagnosed poz for 19 years and have been on all different med regimens. I too have felt the struggle to survive...within the past 9 years, I've had to go on disability, due to constant HIV-related headaches, I've had Hodgkin's Lymphoma twice , anal cancer, skin cancers, and 5 days after my 50th bday, I was in the hospital for 17 days with pneumonia. So I think I can relate to your feelings. It didn't take too long to feel that part of my life had "ended," BUT I also feel another part of my life just started. Even though I can't work, I still feel that there are so many things that I can do. I've made friends with some local elderly people, for whom I help doing whatever they might need, or just socializing with them. I also tutor ESL and find so much satisfaction in helping others. I used to be constantly climbing the corporate ladder and did quite well before I started getting sick. Then I realized I was defined by how successful I was, and got a lot of self-satisfaction from my work. But when work ended it took a while before I also lost my self-esteem, because I had nothing to allow me to feel good about myself. That's when I started doing volunteer work, with the goal of helping others...so I could feel useful and have a life worth living again. Nothing was worse than that time, when I didn't have anything to hold onto or on which to focus , except my illness. I think the key to getting over the transition from being defined by my illness, is having a positive attitude and a lot of support from my partner and my friends. Yeah, I still feel older than my actual years and get tired of struggling to stay alive so often, but I don't allow it to define who I am. My only suggestion, is to focus as much as you can on doing something positive for yourself...something that will make you feel good about you! The rest of it will fall into place.

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People are like stained glass windows, they sparkle and shine when the sun is out, but when darkness sets in, their true beauty is only seen if there is a light within. --Elisabeth Kubler-Ross--

Youth passes and we are reluctant to let go; especially when people sporting similar circumstances seem to be doing so swimmingly well. PLWH/A are often relegated to the sidelines in life or as Roy Cohen's (vile) character in Angels-in-America evoked "kicked out of the parade." A 50+ POZ guy is practically anathema to the gay, employment, insurance and health communities. Yes, you (and I) have lived a life. Perhaps it was meaningfull or meaningless. Who knows? The good new is, at 52 there is a life left in front of us. One somewhat free of the tangles of "getting ahead" and "getting laid." My heart says that something much more spiritual, personal and rewarding is available - else you would not be here to receive it.

I was really touched by your message and wanted to respond. I'm 50 and must admit I do feel a lot older at times, usually when I'm sick. I've been diagnosed poz for 19 years and have been on all different med regimens. I too have felt the struggle to survive...within the past 9 years, I've had to go on disability, due to constant HIV-related headaches, I've had Hodgkin's Lymphoma twice , anal cancer, skin cancers, and 5 days after my 50th bday, I was in the hospital for 17 days with pneumonia. So I think I can relate to your feelings. It didn't take too long to feel that part of my life had "ended," BUT I also feel another part of my life just started. Even though I can't work, I still feel that there are so many things that I can do. I've made friends with some local elderly people, for whom I help doing whatever they might need, or just socializing with them. I also tutor ESL and find so much satisfaction in helping others. I used to be constantly climbing the corporate ladder and did quite well before I started getting sick. Then I realized I was defined by how successful I was, and got a lot of self-satisfaction from my work. But when work ended it took a while before I also lost my self-esteem, because I had nothing to allow me to feel good about myself. That's when I started doing volunteer work, with the goal of helping others...so I could feel useful and have a life worth living again. Nothing was worse than that time, when I didn't have anything to hold onto or on which to focus , except my illness. I think the key to getting over the transition from being defined by my illness, is having a positive attitude and a lot of support from my partner and my friends. Yeah, I still feel older than my actual years and get tired of struggling to stay alive so often, but I don't allow it to define who I am. My only suggestion, is to focus as much as you can on doing something positive for yourself...something that will make you feel good about you! The rest of it will fall into place.

Dbport,

Thank you for your thoughts... I feel that I am in a transition time myself indeed.Right now I am active in helping people with HIV. And it does give me the feeling of being useful again.

I am slowly dragging myself through the debtors and accepting that there is no money for food....Some of my friends have brought some food over and we had a great time on the terras.....

Good to hear and read your story.

thnx

hermie

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Diagnosed in 1987 and still kickingViread, Kivexa (Epzicom),Viramune once daily

I made $ 50.000 a year in 1995....18 years later I barely get $ 20.000... and living on my own, in Europe, with gas- and foodprices soaring..

I understand honey. In 1986 (over 20 years ago! hard to believe) I made twice what I am living on now. That is a very bitter pill to swallow, and why I am always advocating that people with HIV hang onto their jobs and careers as long as humanly possible. (it's also why I get p.o.'d when someone takes a swipe at us "disability queens" in Living With)

Last Sunday I passed the 70 year mark, and right up front I want to forewarn you that my experience has been considerably different.

I was diagnosed with HIV in 1989 so I am in my 19th year. I began meds (those gawdoffall early drugs 3TC, ddI etc. and then PIs) in 1996. Neuropathy at one time made walking difficult, but I have been able to deal with it, and now have onyt minor discomfort.

My regimen for the last five years has been Sustiva, Viread and Ziagen, and for the last four years I have had an "undetectable" viral load and a T4 count between 585 and 714. I usually coast in the 600s.

Three years ago I was found to have HCV Type 1 (and the worst of Type1!) acquired it seems from unsterile equipment used to perform a colonoscopy (I suspect this because I have not been sexually active for nigh on 10 years). For 7 years I have been on 3000 mgms of Niacin daily, (the flushing type) for my cholesterol and triglycerides, all of which have held within the normal range for the last three years. The latest prescription drugs for cholesterol either did not work or gave me significant side effects.

When I turned 66 I began working only three days a week, although admittedly some of those days run to 10 or 11 hours, and I do find I need those days off to rest and recharge. But what 70 year old wouldn't. Perhaps I have been one of the lucky people, but while I think the variety of problems I have faced and continue to face should have worn me down, they haven't.

I live in a rural area where no one knows my HIV status or my orientation, and that must remain so for as long as I continue to work in pastoral care. Sometimes I think it is my vocation, reaching out to others, that keeps me going! I'll come out of the closet when I finally retire or can no longer work, but for now, I greet each new day with joy and expectation.

Get back to me, via this page, and tell me I am full of sxxx if you want to. Or, if you want to know a bit more about how I seem so damnably fortunate, let me know that to.

Thank you to Bettytacy, jg1962, and Peter S. for welcoming me to the forums.

I thought my first forum entry [a response to "At 52 I feel as if I have lived my life"] was a bit long, and I was worried that I might turn him and other readers off. As I expressed in my reply, I live a closeted life, so your acknowledgments gave me some warm fuzzies. I live closeted because, as a pastor, I need to respond to all people whatever their needs, and I don't need their personal biases, phobias, etc. to get in the way. That doesn't mean that I leave them with all their baggage, but the journey with them leaves me short of support for myself. This forum may be just what I need.

I am not what some might call a "traditional" pastor. To me, life must be lived fully in the here and now. All that bit about "salvation" coming at the end of this life doesn't fly with me, because the origin of that word is in the Latin "salve" [what we once called "ointment"] meaning "to heal, to be made whole." [I'll keep this short because this is not a theo-forum!] My experience has been that I have been brought to new life -- in this life -- again and again, healed from physical, emotional and spiritual wounds. Resurrection happens in the here and now [and if there is something after this life, well, thats gravy, isn't it?]. This is my way of explaining how I am able to live with joy and hope and peace. Martin Luther said, "Each day I rise from my bed to new life," and that is my path too.

At 59, I consider myself the recipient of a miracle: diagnosed at 35 and told I would die of AIDS within a year, finding true love, as it has turned out to be, at 37: and our both living with our illness all these years, each surviving a period of being told THATS ALL, FOLKS and continueing to hope in surviving and indeed, finding the way to go on. We are happier now than ever before, partly because we are both still here: he is 62 and I send him out to work tomorrow morning at 8:00 a.m., and start his dinner at 4:00 in the evening. We have our home, and each other, and pets, and a very few good friends: not many, too few of course: its hard to make friends at our age, and everyone has died or moved away or drifted into their agendas. My college roommate is now more involved with his boat than with me or anyone else.

So do I feel that life is ending, that I have lived my life? My mother died at 54, my father at 67, one a suicide: guick and painless and easy,: one a long cancer death with a definite wish not to leave me alone at 30. So I am in between what I have always persumed to be the markers of age. My health is meagre at best, with complaints easily recognized here - more so, due to HIV I am sure, than is usual at my age of, again, 59. Dee is relatively strong and moving forward now, but he is dimming in some difficult ways. I can see things that will end my life: losing him, losing what we have, a downturn in my multiple issues, age has taken away enough now and there is not much more to give to it, but I have plans and needs and a man to care for (what I always wanted and longed for, and he kissed me goodnight before turning in) so my lucky star continues, and IT IS NOT HOW LONG BUT THAT I LIVED< I WAS HERE and I AM HERE NOW that matters. There are birds in the trees outside my window, nesting, and my cat has taken up the hobby of watching them: she is 16 and it gives her great feline joy. My roses are in bloom. And I shall spend this night with Dee. So laugh with me. I have cried enough to know the wealth of laughter, the burden of tears. Age is when you throw off burdens, and take forward what you can travel forward with. Do not tell me you have not learned, in this test of survival, how to tie your shoes when you cannot bend down: buy loafers and just slip them on! From Ward, who never has time to go shopping...

My thing is that as I get older, now at 49, life seems to get shorter. Yeah, and HIV seems to cut that in half. Maybe it's the meds fault but trying to have a positive outlook on life is a struggle. Or I wonder if this just a normal physical adjustment to getting older. I just know as usual I have my up days, my down days, my ok up days, my ok down days, my greats and my horrible days. The advantage of being older is to know from experience that the horrible days aren't all that horrible and better days are a comming. I hope that all of you have better days comming.

This is my first post, though I am drawn more to addressing student loans than merely introducing myself.

I was infected in about '85, on AZT by '89, thereafter with various meds and regimes, '95 'graduated' to AIDS and hit nadir, undetectable on new drugs since May 2007 (barely made it; viral breakthrough on old ones February '07). Wondrfully lucky througout as never suffered an OI, just depression, drug side effects and fatigue. Eh, it let me fight harder. THEN a $(&_$#($__$# anal cancer diagnosis/surgery with recovery since April '08.

Anyway, back in '99 at 44, I got on SSDI after an admin law decision (had to fight for it; mostly due to drug side effects) and used back benes to go to law school (being immensely burned out dealing with public health/HIV regulations and policy making for the previous 15 years). Figured it would give even more weapons (nothing like noting I've a J.D. and LL.M.in the field under review when testifying on, oh, the criminal law and HIV): take THAT idiotic M.D.s) I couldn't even borrow money fast enough to pay tuition over 3 years, so I stretched it out, borrowing only Direct loans, had a GREAT time, and graduated in '05. Got my LL.M. in '07 with more loans, this time with a Grad PLUS loan, and but for the #)&$#__$# cancer would now be practicing criminal defense and some HIV/AIDS law. Give me another four months.

Side point: boy, body-image issues didn't hit until the cancer, nor did many age-related one's (partnered now for 22 years, he's negative) but NOW... sheesh. EVERYTHING is much harder, takes more deliberation and discipline (which I have never had)...

Point is, though I am $140,000 in debt on student loans, I am paying nothing on them. I am on the income contingent repayment plan: your payments are contingent on your income. In fact, I would not have GONE back to law school but for this program, as my health is unsure and in any event, I wanted to practice the kind of law that didn't make a helluva lot of $$. As it is, I earn SSDI and little else so $0 taxable income, so no loan payments. Loan payments = Gross income - fed poverty rate x 15%, and no more, on a non-extendable 25 year term, and written off (with possible tax consequences) at end of 25 years if you couldn't pay them off. The chance of me making it into my mid to late 70 being a mite low, I think nothing of the much-later tax consequences (which in any case, the recent Dem Congress is working to write off).

Advice: I think you MAY be able to consolidate even NON-Direct student loans (all but purely private loans, though defaults might be a problem), THEN shift onto an income contingent repayment plan to get yur payments down... or to nothing. And I think the Dem Congress has recently made the laws even better (even lower payments calculated to income). So a) see if you can consolidate your loans under Direct Loan Consolidation, and check out the new ('07) loan programs; b) get on the income contingent repayment plan (or the new one which I think is even better) and c) figure out how to handle defaults... you MIGHT be able to reduce your loan payments to something reasonable.

Second: if your health is significantly worse since you took out the loans, I think there is a clause that that allows you to petition to get out of them. Just flat be able to write them off.

Third thought: go back to school. Why not? It can be free, as long as you are poverty-stricken anyway.

i cannot afford to pay for meds and my student loans and put gas in my car and food on the table. And the student loan money has to be paid first. I have made a short term deal and pay $700 per month but this does not even cover the interest on the loan and my balance goes up each month. May Kenneth Cole could hold ME a fundraiser LOL

Third thought: go back to school. Why not? It can be free, as long as you are poverty-stricken anyway.Incidentally, being on SSDI gives no relief for loans.

Kelly,Welcome to the forums, and thanks for the plug for going back to school. We're never too old to learn something. Going back to school three years ago was just what I needed professionally and mentally, even if I've had to pay for about half of my degree program out of my own pocket.

Since some months I strongly feel as if I have lived my life, meaning, I am done with it.Recently, I read an article in a Dutch newspaper on how LTS felt... and it came as no surprise that most of them shared my experience.Some of them put it as follows : "though I am physically well at 50, I mentally feel like a 75 year old... "

Could it be the constant fight, the struggle to stay alive, loosing your job and health at a relatively young age?

I wonder if others feel the same...

love

Hermie

being 51 and going on 52 this fall.........and having AIDS for well over 20yrs. I don't know what else to do, but to keep on surviving, it's all I really know after 20yrs. and I can tell you this............I'm not stopping now......what else do I have to look forward to?

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974